Whether you are diagnosed with cancer or diabetes or clinical depression, your chances of recovery, your chances of remission, your chances at a happy life depends on who you have around you. Your support system. Your keepers. During my last neuroscience session, I learned that the survival rate of cancer patients increases by 50% if the patient has at least one person in their life that they feel they can talk to. And even if you are lucky enough not to have a disease of any kind, we all need people there to “keep” us. We do funny things when our lives are flung into chaos. We push people away or we choose one person and drown them because we are too fearful or ashamed to share the reality of our situation with anyone else. Illness can be very much defined the way Dr. Frankenstein defined pain – you can’t track it to one specific place, it goes everywhere, defies logic, it even exists without a source. Illness is not satisfied with staying in the confines of one body. It permeates the skins of other bodies, it stresses their minds, it takes them in and whether you like it or not, you’ve infected your keepers. They have it too.
I mention my master keeper in this blog quite often. He has held this position officially for almost 6 years. I would say that it was not his choice, since it was I who burdened him with the emotional baggage of an illness I refused to fully reveal to anyone else, but I cannot ignore that he did choose to stay. I have listened in sadness to dear friends and fellow “lupies” who describe to me their pain and frustration watching lovers and friends walk out of their lives as they lie bed-ridden and in crisis. I have never lost a keeper. I am humbled by that every second of my life… and no one humbles me more than my master keeper. He is on a well-deserved “sabbatical” from his duties at present, living in a land of weeping willows far, far away. Looking back, we should have known what was coming. All the warning signs were there. It’s almost laughable how visible the wolf really was, just waiting, waiting, waiting, right there, right in front of our faces. But, I don’t really know how anyone can be fully prepared for Lupus Cerebritis. I am still reeling from the complexity and strangeness of it all, it’s inexplicable impact and power. It leaves nothing unscathed. The wolf devours everything: The body, the brain, the mind, the spirit. There is no refuge. There is no rest.
He will return one day soon and when he does he will hand over the position of “master keeper” to the person who should have had it in the first place… me. I will never be able to articulate all the things that he has done for me, nor will I ever feel like I have done enough to repay him and I am sure that I will never stop feeling guilty for all the things I put him through. All I know is that I am grateful for him. Without him I would not have realized what I do now… that I am the princess who saves herself.
So, today, during Canadian Thanksgiving Weekend, I dedicate this post to my keepers. They know who they are. I am here because you love me. I am grateful for you everyday. I promise you that I am doing everything I can to make sure you never have to go through something like this again.
A special mention goes out to my parents, the two people who have truly been living with Lupus Cerebritis. They stand like an impenetrable stone wall and everyday they face it, they take it, they wait in hope that their daughter will return to them whole with no conditions, no complaints. My heroes, my team-mates, my healers.
And to all of you out there that suffer with a chronic or terminal illness of any kind or if you are someone who is completely healthy but is going through an emotional crisis, remember that your keepers need keepers too. And caregivers, remember that you deserve a break, that you need to be “kept,” that the best thing you can do for the person you’re caring for is to care for yourself. It’s a difficult and scary balancing act, I know. Hardly any of us get it right, but as long as we keep trying, right?
And so I am thankful. Thankful that I am “kept.” And yes, I am even thankful for the wolf. Having lupus is a gift, albeit a sometimes crappy gift that can explode in your face, but still a gift. I would not change one part of my tissue-damaged brain. This is part of my journey. I was born to live through this. I was given my keepers so that I can live through this and I am. I am feeling better everyday now. I am getting there. I will get there.
And keepers, it’s all because of you.